Why more awareness is needed for Polycystic Ovary Syndrome

The National Polycystic Ovary Syndrome (PCOS) Association, and 21 congressmen, has introduced a resolution to designate September as PCOS Awareness Month in the USA. While there are other awareness weeks and events out there, September is well known across the globe by those involved or affected by PCOS as the month to spread knowledge and raise awareness of this long-term condition.

Impacting between 8 to 20% of women of reproductive age worldwide, PCOS is a common disorder with no known cure which can result in women experiencing a decreased quality of life due to their condition and its symptoms. These symptoms can include excess facial and body hair, alopecia, acne, and difficulty losing weight and also invisible symptoms such as problems with blood-sugar levels, lack of or constant periods, polycystic ovaries and often of most concern for women, sub or infertility.

It is this variety of symptoms that makes recognising the condition all the more difficult for women and health care professionals alike as every woman can experience the condition slightly differently. Confusingly, women do not need to have polycystic ovaries to have PCOS. This confusion has led to the National Institute of Health Office for Disease Prevention to call for the condition to be renamed.

Some researchers have even suggested that a new name should be created for those women without reproductive symptoms and PCOS retained for those with reproductive impacting symptoms. In 2016, the name of Metabolic Reproductive Syndrome was proposed but while the experts continue to discuss what PCOS should or should not be named, the women with the condition are still living with their symptoms and fighting an ongoing lack of awareness of their condition both in the general public and in the health care system.

What’s more, women with PCOS are at an elevated risk of co-morbid conditions including diabetes, cardiovascular disease, and some cancers. Women with PCOS are also more likely to experience depression and anxiety alongside their PCOS. As you can see, what can start with one condition can quickly snowball into a much more complex and psychologically demanding experience.

Often women do not get diagnosed with the condition until they begin to try for a family, unfortunately for some women, this diagnosis comes too late and these women are left with a diagnosis and a loss of a family they have dreamed of since they were young. This experience, horrific for those who go through it, only highlights the need for an increased awareness of PCOS to help women begin to manage their condition.

From a practical perspective, individuals with more than one long-term condition are the most intensive users of the most expensive health care services in England, with a person with three or more long-term conditions averaging £8,000 per person per year. In comparison, a person with no long-term conditions costs an average of £1,000 per year. In 2005, Dr Ricardo Azziz Chief Officer of Academic Health and Hospital Affairs at State University of New York, and colleagues estimated that in the US the total cost of evaluating and providing health care to reproductive aged women with PCOS was $4.36 billion. Due to this large cost and the risk of serious co-morbid conditions, some researchers (including myself) have called for PCOS to be more liberally screened for, possibly allowing earlier diagnosis and intervention. This would not only be beneficial in an economic sense but would allow women with the condition more time to adapt, adjust and develop effective coping and treatment strategies to help them manage their condition.

Symptoms

It’s important to be able to recognise the symptoms of PCOS.Common symptoms to keep an eye out for include:

• Irregular periods or having no periods at all
• Difficulty getting pregnant
• Excess hair growth on the face, chest or back
• Weight gain or difficulty losing weight
• Thinning hair or hair loss from the head
• Oily skin or acne

Other associated symptoms can include:

• Mood swings, depressive and anxiety symptoms
• Pelvic pain
• Sleep problems

If you recognise any of these symptoms or have concerns you may want to see your GP. You may consider making a list and if necessary, a diary of your menstruation. This will help you to keep on track and feel prepared for your appointment. Remember to ask if you would prefer your appointment with a woman, as some women find this more comfortable and feel more able to open up. Once you have visited your GP, they may send you to a specialist for blood tests and an ultrasound to help determine a diagnosis.

If diagnosed, this doesn’t mean there is nothing that can be done. There are a variety of lifestyle changes you can make to improve and combat your symptoms. Exercising regularly and eating a healthy diet have been shown to improve quality of life in women with PCOS and improve depressive symptoms as well. Similarly, there are a number of treatments and medications you could have to help you, depending on your symptoms. You may be offered medication in the form of an oral contraceptive which will help to bring your periods in line and may help manage other visible symptoms. If you are looking to conceive there are options available to you.

If you have a diagnosis or want to find out more, the UK based PCOS charity Verity is one place you can go to get more information on the condition. There are also several books available that can help you to develop your knowledge of the condition.